May 30, 2026

@michaelokun

Can uncertainty in Parkinson’s disease actually be discussed openly? This new study may surprise you. Uncertainty means there are aspects of diagnosis, progression and treatment that cannot yet be predicted or known w/ complete confidence for an individual person. Parkinson’s disease is filled w/ uncertainty, especially early in the disease course. Hillen and colleagues describe in a new paper in Neurology Clinical Practice how neurologists communicate uncertainty during Parkinson’s disease diagnostic consultations and how these conversations affect patient trust and feelings of uncertainty. Key points: - Clinicians expressed uncertainty frequently during Parkinson’s diagnostic visits, especially around diagnosis, disease progression and medication response. - Most uncertainty was communicated implicitly rather than directly, frequently using softer phrases such as possibly or might. - Patients’ feelings of uncertainty actually decreased after diagnostic consultations, and trust in clinicians remained high even when uncertainty was openly discussed. My take: This study gets at something deeply human in Parkinson’s disease care. We frequently feel pressure as health care providers to project certainty, however Parkinson’s disease simply does not allow that luxury. Diagnosis can evolve. Prognosis can vary dramatically. Medication responses differ from person to person. What resonated w/ me is that honesty about uncertainty did not appear to damage trust. In fact, transparency may strengthen the therapeutic relationship when delivered thoughtfully and compassionately. Here are 5 points that resonated w/ me: 1- Parkinson’s disease is not a simple yes or no diagnosis and uncertainty is built into many aspects of care. 2- Patients and families may tolerate uncertainty better than health care providers sometimes assume. 3- The way uncertainty is communicated may matter as much as the uncertainty itself. 4- Offering a plan, ongoing follow-up and emotional support may help folks feel steadier even when answers are incomplete. 5- We need to teaching health care providers how to communicate uncertainty.